Wednesday, May 18, 2011

This week, Emilie asked if I could share a father's perspective on her goal of completing an Ironman just a few years after her battle against Stevens Johnson Syndrome.

The two situations are completely different and yet they show the extremes of where life can take you. The Ironman and SJS have been the Alpha and Omega of my daughter's physical life. As a father I will take immense pride when the horn sounds and Emilie jumps in the water for the first leg of the Ironman. As a father I've also felt the despair seeing my daughter fight for her life and feeling like there was nothing I could do to help her. Now I know where the gray hair really comes from.

By competing in the Ironman, Emilie has lived the mantra that we as parents tried to teach her at an early age. Set a goal... Determine what's required to achieve that goal... Do the training needed to achieve the goal... NOW GO FOR IT!! Emilie's success will not only be measured in time splits and finishing rank, her real accomplishment will be measured in what she has learned about herself as she has prepared for this monumental challenge.

The first time I entered Emilie's hospital room and saw her in a coma I couldn't wrap my head around the surrealistic scene. I was overwhelmed with the total devastation of Stevens Johnson Syndrome. I searched for a simple component to that situation that I could understand. I needed something, anything, to ground my emotions.

As the dawn breaks over Coeur D'Alene, my wife and I will join Dave's parents and every other spectator to cheer on the Ironmen and Ironwomen jumping in the lake that chilly morning. We will cheer their determination, we will cheer their fortitude, we will cheer their resolve to push their bodies to a point that most of us simply can't understand.

And we will give a special cheer for a young woman who has traveled an unbelievable journey. Emilie, we love you and support you... and we will be at the finish line with open arms.

Thanks Dad! Love you too!

To donate to the Burn Center, go online to www.uch.edu/donate. In the designation field, choose "Other" and type "Burn Fund (Team Emilie)."

Monday, May 9, 2011

For this week's blog post, I thought I would take you on our Saturday 100 mile bike ride/three mile run. I packed my camera in my bento box, along with my many gels and bars, so I could take pictures of all of the beautiful places Dave and I were able to see. For those of you that are from the Denver area, you will be able recognize some of these landmarks and locations. Those of you not from here will be able to see the beauty of the greater Denver area.

Before we even set out, I had an unfortunate allergy problem. As I was getting my bike ready for the ride (pumping up the tires, greasing the gears), I experienced an allergic reaction in my eyes. They were swollen, stinging, and blood-shot. This was not Stevens Johnsons Syndrome, but just a typical springtime allergy. That being said, my biggest concern was with taking medicine to treat the allergic reaction. Considering that I don't know what caused my SJS, I try to stay away from all medicines when I can.

Dave had to go to Walgreens to get some allergy medicine while I laid on the couch with an ice pack over my eyes. Dave questioned the pharmacist on the possibility that a medication would cause Stevens Johnson Syndrome before he purchased anything. When he got home, we researched the medicine he chose further on the internet. We were even tempted to call my sister-in-law, Sarah, who is an amazing doctor in Wisconsin, but decided we had enough information for me to take the drug. After about an hour, the swelling went down and we were finally able to leave for our ride. We did not get out of the house until 11:30.

Mile 0- Starting out from our townhome in Southeast Denver.

Mile 7- View of the Denver Performing Arts Center as seen from the Cherry Creek Bike Path

Mile 60- Lair o' The Bear Open Space (a place my mom and I would "hike" when I was recovering from SJS)

Mile 65- The entrance to Red Rocks Amphitheater

Mile 65- The Incredible Red Rocks

Mile 70- Slightly lost at Bear Creek Lake Park

Mile 70- A view of the Denver skyline from the front range

Mile 75- We even rode to the top of a "high point" for good measure- Mount Carbon (5,772')

Mile 101.6- A pretty slow average pace, but considering the 3,700 vertical feet of gain and an early morning allergic reaction, I'll cut myself some slack

Mile 0- Not quite done yet... On our way back out after the ride for a quick 3 mile run (if you look closely you can see some sweet bike short tan lines)

We had a wonderful weekend in the breathtaking Colorado outdoors. Dave and I are so fortunate to be surrounded by the majestic mountains and peaceful scenery along the front range. I encourage you, wherever you may be, to take full advantage of all of the natural beauty that surrounds you.

In fundraising news, we have raised $1,000 for the University of Colorado Burn Center. This money will help to support burn patients and their families, as well as to spread awareness about SJS and other types of burns treated in the Burn Center. Thank you so much for all of your generous contributions. With 48 days left until the Ironman race, I look forward to seeing how much more we can raise together!

Help to continue our fundraising efforts by linking to either this blog or the University of Colorado Foundation site from your Facebook page or personal blog. A BIG thank you to Angie Caruso for highlighting this fundraiser on her blog, The Ripple Affect. Angie highlights a different charity every week in her posts and this week, with the help of Karen Trone, showcased our Burn Center fundraiser and helped to build awareness of Stevens Johnson Syndrome.

To donate to the Burn Center, go online to www.uch.edu/donate. In the designation field, choose "Other" and type "Burn Fund (Team Emilie)."

Monday, May 2, 2011

Stevens Johnson Syndrome was a very isolating disease for me. I felt so alone as I tried to comprehend what had happened to my body and how it could potentially happen again.

When I awoke from the coma, I was surrounded by loved ones telling me stories about myself that I did not experience with them. I was in an induced dream world while they were sharing the horrifying experience of watching my body slough off much of its skin. After we returned home from the Burn Center, Dave would try to tell me stories about the breathing tubes, feeding tubes, bandage wraps, and injections, but I felt like I could never understand it the way he and my family did. I had so many questions, yet seemed so removed from the answers, like the entire ordeal happened to someone else. I was asleep while they watched, gowned and gloved at my bedside, as my body fought to stay alive.

Upon returning home, I would ask my mom or Dave to research Stevens Johnson Syndrome on the internet and to read to me what they found. Each website revealed the extreme rarity of this life-threatening disease. I tried to find others that I could relate to, that could help me understand what I was experiencing, yet my results were slim. Beyond a few informational sites and one small foundation, very little else was out there for me. There was not a support group to attend, a motivational survivor to listen to, a 5K to walk, or the right color ribbon to wear. I didn't understand what I had and the doctors, as amazing and knowledgeable as they were, were unable to give me definitive answers. They did not know what caused this and they did not know if it would return.

As friends would call to get updates, they were confused by my condition. They would speak horrifically about the research they had done on the internet and the pictures they saw on Google, yet I could not help to explain anything. At this point, I was still blind and on the couch, hoping to heal from a disease I did not understand. I quickly tried to change the subject with them, deflecting attention from my embarrassing, weak, scarred condition. My family told me my skin had fallen off in the Burn Center and had now begun to heal, but I could not see and did not know what this meant.

When I returned to teaching after two months of sick leave, I did not tell anyone the extent of my condition. To the students, I said that I was sick and that I was much better now. To staff, I told them that I had a very rare allergic reaction and little else. I did not want them to do the same internet research, discovering the truth about this terrifying disease. Then, at lunch, I would lock the door to my classroom and sleep at my desk out of exhaustion. I would put band-aids on my fingers to hide the nails that were falling off, trying not to scream if I snagged one on a desk during a lesson. I would wear my hair the right way to cover the bald spots and put in eye drops every chance I got to tolerate the burning pain.

It took years to actually open up to people about what happened to me. Vague answers started getting more specific and I began to speak freely about the pain and the fear I'd experienced. Now, as evident on this blog, sharing the details of my condition is something I can do comfortably. My willingness to share helps me to create a resource I did not have during my own recovery... a survivor reaching out to help educate me about Stevens Johnsons Syndrome and support me through my darkest times.

I now accept a responsibility to future patients with Steven Johnson Syndrome. I must talk openly about what happened to me in order to help them understand that they are not alone. Part of the purpose of my blog is to begin that discussion and disclosure. The more people that know that this disease is out there, the less isolated and confused someone will feel that gets it in the future. When ready, we need to share our stories to fulfill our part as a community of survivors.

I am also a SOAR (Survivors Offering Assistance in Recovery) volunteer at the University of Colorado Hospital's Burn Center. I am trained to talk to burn patients and their families from the perspective of a survivor. While the other SOAR volunteers experienced external burns, I offer a unique experience as an SJS/TENS survivor. While I am not a medical expert, this peer support can help give guidance and outreach to those that need it most.

This fundraiser helps to fund programs like the SOAR volunteer program, community outreach on burn information, and support for the families of burn patients. It is important that these patients do not feel alone and have a chorus of support surrounding them during their physical and mental recovery.

I would like to extend my deepest gratitude to the Optimist Club of Monaco South. Collectively, they were able to raise $400 for the Burn Center under the leadership of my generous father-in-law, Dick Nickoloff. Thank you so much for helping to raise awareness of Stevens Johnson Syndrome and supporting patients and families going through difficult times.

Dick and Dave at the finish of the Denver Half Marathon!

To donate to the Burn Center, go online to www.uch.edu/donate. In the designation field, choose "Other" and type "Burn Fund (Team Emilie)."